Chris, right now I am going thru such a bad time. Thinking is my Dr doing everything he can for me, why me, why did I get this disease. I know I have been so grouchy lately to everyone around me. I dont like myself when I do that, but it seems like I cant help it right now.
Every time I see the Dr he keeps saying I shouldnt be so tired with count of 10.6. I just want to say sorry, but I am. Cant help it. Then i was reading something the other day about MDS and it said that people that has a second problem sometimes are more tired with that number of a blood count. I wonder if that is why. A couple of years ago they said I had a heart attack, ( didnt know I did) but it damaged the bottom part of my heart, so I wonder if that is why. I dont know right now I am just really really confused. I have been feeling light headed lately too. Dont know why

Cnmeti, I can't comment on the Mayo Clinic, as I've never been to one, but of course they are world-renowned. I do believe that you need a second opinion from somewhere. Something is wrong, and you know your body better than anyone.

I also understand the why-me part, as I've been there too. Everyone has a different take on that, but for me it boils down to "it's not what happens to you, it's how you handle what happens to you." Trust me, some things I don't handle well at all!!

I live among seniors, and I'm amazed at how folks handle their infirmities. The urge to live despite the difficulties is pretty strong for most.

Is there a way that you can pare down your life to accommodate the tiredness? Our hearts and prayers are with you. You are not alone.

Cnemiti,
I had also considered Mayo's but decided on MD Anderson in Houston, TX. MD Anderson is the largest cancer center in the world. I am in Tx now and have seen my doctor once. Tomorrow I have another appt. with him and we will discuss my treatment. My red blood cells are my problem and what you describe is the way I feel some of the time although my red blood count drops when i feel this way. I would definitely seek another opinion. Where do you live? I have heard Mayo's is a very good hospital also but I have all the confidence in MD Anderson. I am now deciding whether to go back to the hemotologist in my home town (Illinois) but I am thinking not. I would fly back and forth to Houston for doctor appointments when needed. I was diagnosed the middle of March so I am still a little in a whirlwind but finally starting to accept my diagnosis. I will know more tomorrow. If you need, I can get you my phone number and we can talk over the phone.
Good luck to you,
Susan

Cnemeti,

I get tired, and fall asleep easily, and my Red Cell Count is now 10.2, and has been at 10.0, but I do not find myself exhausteed, so I guess the advice that you get a second opinion is a very valid one. We all react differently to situations, and I guess no 2 people with the same blood counts will react in the same way. Perhaps one might think I eat too much spinach to really get exhausted, as Popeye did, and perhaps you do not eat enough, or something like that, but since I hate spinach and never touch it, and do everything I should not do, I feel you must get hold of an expert on refratory anaemia, as this is most likely the cause of your exhaustion. I feel for you, for MDS is such an odd problem, and it seems no-one has all the answers, and its a bit like trying to piece together a jigsaw, with a blindfold on.

I am certainly praying for you, as I do for all other MDS folks on DS.
Keep trying to get the answers, never take NO for an answer, and use every atom of your available energy to try and solve the problem. Meanwhile sleep well at night, Whisky and honey is recommended by some (not me!, I hate whisky) and have a good siesta every day. It will help.

A big hug, sincerely meant. Persevere, please, and keep us in touch with jhow you are getting on.
Chris.

Susan, My red blood cells go down too, Whites go up and down. I was diagnosed in Sept. I have good parts, but now that Summer is coming I dont want to be this tired. I want to do things, I am thinking of applying for disability. I dont think my husband thinks that is such a good idea. I live in Indiana close to South Bend, I live in Mishawaka, we dont really have anything close. I work at a Health Speciality Clinic in Elkhart and that is where I see my dr now.

Hi Susan, Birdmom, Chris, Cnemeti, Den, Dizzy and Healingwise!

I hope everyone is having a good day today. Spring has definitley sprung around here and all is well. This board has been so active lately! Thanks for the comments and I am glad to see that even thought a few of you aren't feeling totally great, you are taking steps to correct that and getting the support you need to cope. That's the spirit!

I am having a real hard time, my husband just dosent seem to understand. Every time I tell him Im tired. He says well I am tired too. I know he is probably tired, but it is not the same tired that I feel, I just give up on him understanding. I know it is probably because he was going to retire at 62 That would of been Nov of 2008. I was diagnosed in Sept of 2008, so I had asked him if he could just work a little while longer because he has such great insurance and mine is bad at the clinic I work at. and now I am talking about quiting work and going on disability. He is not liking it. So I probably will give up on the idea and just keep working. Thanks for letting me use you as a sounding board.

So Sorry to hear of your hard times cnemeti - maybe if your doctor talks to your husband? You are right - you need the best insurance possible or you will have lots of out of pocket expenses.

Mom just got out of the hospital yesterday after 7 days. Her numbers are up but we almost lost her on Tuesday. She had 5 units of blood, 3 units of platelettes and shots for the white blood. The Vidaza just was so hard on her, however, her numbers are up for the first time since the Revlimid stopped working. Like you Pharmgirl, I am trying to just enjoy the time we have together.

Off to see mom and bring her dinner. She is so glad to be home at least for a while.

Glad your mom is at least doing better. Sounds she was thru alot. Give her a hug from me. Carol

Dear Carol,
Tell your husband that my red blood cells are at 10.2, yet yesterday I slept for 3 hours in the afternoon and 2 hours in the evening. Sounds to me as though he is in denial and does not want to know that you are going thro REfractory Anaemia.
Dear Pharmgirl,
Glad your Mothert is out of hospital. Been thinking of her, give her a big hug from me.
Chris.

I saw my oncologist today, said he would write a letter for me to apply for disability. I think I will give my notice tomorrow. He said he wanted to start me on some kind of a infusion drug. I forget the name of it. Said I would have it 7 times in a row each month for so many months, but I forgot the name

Chris! I am so glad you gave Carol another man's perspective on things. I have no doubt that Carol's hubby is great but this is a very unusual and rare disorder, it will just take some time for him to absorb everything. Also, I guess I don't have to tell you that your HCT being at 10 is unacceptable. Your blood oxygen levels are too low and your body will start deciding which organs are a priority. For instance, your kidneys would not be considered a major organ with a Hematocrit that low. Don't make me fly over there and give you a transfusion! Please take care my dear English fellow!
Andrea

Hi Carol,
I am so glad that you are seriously considering putting in your notice and that you have a compassionate and cooperative Oncologist. With that being said...I know you would rather be at work and not have MDS in the first place!

I hope you will be able to rest up and feel better very soon. I worry about my MDS friends!

Thanks for thinking of my Mom. She found out today that she has been accepted for clinical trials at Mayo. It will take more than one trip and we really will not have many answers until after she sees the specialist. This really was the best news I have heard in such a long time.
Hugs to all!
Andrea

Wow, such big news today!

Carol, I'm happy for you that you are going to take care of yourself at last. Does your husband go with you to your Dr appointments? If not, that may be why he doesn't understand what is happening to you very well. Mine insists on being with me, thank heavens.

And congrats, Andrea, on the Mayo trial for your mom. Who knows what might come of this?

Chris, all those naps just mean you need to rest up before tackling the job of sleeping!!

Hi all,
Just checking in. I've just had a big scare - had a suspicious looking mole biopsied, got a voicemail from my doc saying that abnormal cells were present, and we need to remove it. I looked online at the different skin cancers, and it looked just like melanoma. I really do not need another cancer to deal with. Couldn't reach anyone by phone a the doc's office, voice mail only, so I drove down there and waited until I could see the nurse.
To my immense relief, it's pre-cancerous and will be easy to remove.
It seems like I get panicky and scared so easily since all of this MDS and vertigo started - six years now. I try all kinds of things to stay calm, prayer, meditation, yoga, calming music, and I still break into tears at the slightest thing. I feel very fragile emotionally, even though blood counts are good. Raising a teenage daughter as a single mom may be contributing - she is wonderful, but all teens have their moments.
Is anyone else having these emotional overload moments? Sometimes I feel like I'm just going crazy!
Thanks for letting me vent!
Anne